Research Projects – Current and Past

Current Research

Putting things in order: Prioritizing ACP Barriers and Facilitators with BC Community-based Organizations

The study aimed to understand the perspectives of community organizations by asking them to rank the factors that make it easier (facilitators) or more difficult (barriers) to achieve increased public engagement in ACP in the province. The intended impact is to gain insights from this infrequently consulted group on how funding and initiatives can be tailored to best increase public engagement in ACP.

The video below presents the 4 highest ranked barriers and facilitators.

For barriers, things like lack of awareness, emotional difficulty of the conversation, and confusion about the ACP process aligned with previous studies. However, the interviews did reveal a (to our knowledge) novel barrier specific to the community organisations – the issue community organisations faced when trying to collaborate with the health-care system.

For facilitators, development of clear simple messaging, improved ACP literacy (for both public and HCP), reframing as part of life planning, and simplifying the documenting and transferring of ACP conversations were the highest ranked.

Researchers: Ellie Siden, Rachel Carter, Doris Barwich, Eman Hassan
Dates: March-August 2020
Funding Agency: This project was funded through a Student Summer Research Program Grant from the University of British Columbia


The iCAN-ACP study will adapt and pilot-test a number of advance care planning (ACP) tools in three settings: primary care, long-term care, and hospital care. The research teams will assess acceptability and usability of the tools from the perspectives of patients, families, clinicians, and partner organizations. A fourth team, the Diversity Access Team, will explore barriers to, and facilitators for, the implementation of a multi-faceted suite of ACP tools among marginalized groups of interest (ethnic and sex and gender minority groups).

BCCPC is part of the Primary Care team that will focus on using patient and healthcare-professional tools to increase the uptake, impact, and access to advance care planning for frail or elderly Canadians in primary care. The project aims to determine the impact of interventions that identify patients in primary care who could benefit from immediate ACP and goals-of-care conversations. The team will also evaluate a care pathway supported by clinician conversation guides/training, and patient-facing tools and decision aids designed to increase the feasibility and quality of ACP conversations and goals of care in primary care.

Principal Investigators: John You, Michelle Howard, Doris Barwich, Gloria Gutman, Dev Jayaraman, Sharon Kaasalainen, Daniel Kobewka, Jessica Simon, Amy Tan, Tamara Sussman, Robin Urquhart
Primary Care Co-Investigators: Douglas Klein, Marissa Slaven, Carrie Bernard
Researchers: Dawn Elston, Neha Arora, Rachel Carter, Diana Cochrane, Abe Hafid, Carley Paterson
Dates: April 2017 – April 2020
Funding Agency: Canadian Frailty Network (Technology Evaluation in the Elderly Network), BCCPC



A subproject within iCAN-ACP, this study aims to integrate primary care with CB-ACP programs to evaluate the feasibility, acceptability, and implementation of a Primary Care Clinician-referred CB-ACP intervention to increase ACP behaviors among patients and their Substitute Decision Makers.

Investigators: Doris Barwich, Michelle Howard, Eman Hassan, Rachel Carter, Amy Tan
Dates: July 2019 – April 2020


A Cross-Cultural Conversation in Promoting Advance Care Planning within the South Asian Community

In this research project we will conduct a comprehensive evaluation of community-based interventions related to the understanding of advance care planning (ACP) delivered by trained South Asian (SA) volunteers utilizing the facilitator training curriculum and toolkit developed by BC Centre for Palliative Care (BCCPC). This project will assist BCCPC in understanding the South Asian community’s diverse perspectives of ACP as part of personalized health care that is influenced by social and cultural meanings of health and illness.

The objectives of this study are:

  1. To identify efficacy of the BCCPC-developed facilitator training curriculum and toolkit for the English-speaking population in training bilingual facilitators to deliver ACP information sessions in Punjabi, the most common spoken language by the Sikh Community, a sub-group of the larger South Asian population residing within British Columbia.
  2. To explore the experiences of trained bilingual facilitators while addressing ACP-related linguistic and social/cultural issues for the non-English-speaking population.
  3. To explore the experiences of SA community participants and their awareness of the topic of ACP.
  4. To explore the perspective of the hosting organization in reaching out to the SA community; the sensitivity of this topic; advertising for the session; identifying suitable bilingual facilitators interested in dialoguing about culturally sensitive topics like ACP; and feedback from the community.

Investigators: Savitri Singh-Carlson, Doris Barwich, Eman Hassan, Rachel Carter
Dates: July 2019 – June 2020


Improving palliative care in the home and community: building CAPACITI (Community Access to Palliative Care via Interprofessional primary care Teams Intervention)

The CAPACITI intervention has the goal of building the capacity of interprofessional primary care teams to deliver a palliative approach to care. It provides the foundational framework and active facilitation required to build primary care teams that deliver palliative care, while allowing flexibility to develop a local model, allowing for wide implementation.

The model involves a two-year multi-provincial learning collaborative with education, materials and tools, coaching, measurement support, high-facilitation and adaptation to the local context. It combines three evidence-based interventions and adapts them to the Canadian and local context: standardized education on palliative care; Gold Standards Framework; and Kelley’s Community-Capacity-Building-Model (CCBM).

Principal Investigators: Burge FI, Jakda A, Seow H
Co-Investigators: Barwich DB, Brouwers MC, Howard MI, Kelley ML, Kilbertus F, Kortes-Miller KM, Marshall D, Pond GR, Sinding C, Stajduhar KI, Urquhart RL, Winemaker S
Dates: 2019 – 2024
Funding Agency: Canadian Institutes of Health Research


Development and Validation of a Patient-Reported Measure of Compassionate Care

Patients with incurable and advancing life-limiting illness identify compassionate care as one of their greatest needs. Evidence implies a considerable theory-practice gap, with compassionate care espoused in policy guidance and healthcare reform but increasingly eroding from the bedside. Our research team and KT partners have developed a program of research aimed at understanding, measuring, and improving this reputed key ingredient of care from a scientific and patient-centered perspective. Having previously identified the key components of compassion, and having developed and conducted initial validation of a model of compassionate care in a CIHR-funded qualitative study of patients with life-limiting illness, this study will develop and validate a measure of compassionate care.

The goal of this study is to develop and validate a patient–reported measure of compassionate care in health care. This will be accomplished by addressing the following objectives:

  1. Assess the transferability of the compassion model to diverse patient populations in multiple healthcare settings.
  2. Develop candidate items to measure compassionate care.
  3. Assess validity of the items with data collected from patients and subject matter experts (SME), revise the items, and create a final version of the measure.
  4. Establish construct validity evidence for the final measure in a large and diverse sample of patients with life-limiting illnesses.
  5. Promote the uptake of the measure in healthcare research, policy, and practice.

Principal Investigators: Shane Sinclair, Thomas Hack
Co-Investigators: Barwich, D., Baxter, S., Chochinov, H., Cory, S., Dudgeon, D., Embleton, L.. Forbes, H., Garland, E., Hagen, N., Harlos, M., Heyland, D., Krawczyk, M., Lechelt, L., Leget, C., McClement, S., Puchalski, C., Quail, P., Raffin Bouchal, D., Russell, L., Selman, L., Singh, P., Sinnarajah, A., Stajduhar, K., Thompson, G.
Dates: July 2016 – June 2020
Funding Agency: CIHR

Past Research

Improving public engagement in Advance Care Planning through peer-facilitated group activities

In this study, we looked at new ways to support members of the public to engage in advance care planning (ACP) by thinking and talking about what matters most to them. Most studies in ACP have focused on experts within the healthcare system, however we investigated the role of members of the public providing support and education as peers.
We trained members of the public who volunteer at community organizations to support group ACP activity sessions. The sessions aim to inform, promote conversation, and break down barriers and stigmas around these conversations. We invited older adults and their caregivers and families to attend the sessions.

We looked at the volunteers’ experiences: how they felt running the sessions, what worked, and what needed to be improved. We also looked at whether the activities help older adults to be more involved in ACP activities and conversations. This included whether the sessions increased their comfort with the conversation, helped them identify what matters to them, and helped them talk about it with their family and healthcare providers.

Refer to findings poster for more information

Principal Investigators: Doris Barwich, Jennifer Kryworuchko, Arminee Kazanjian
Co-Investigators: Eman Hassan, Pippa Hawley, Katherine Kortes-Miller, Richard Sawatzky, Jessica Simon, Shimae Soheilipour, Kelli Stajduhar
Project Manager: Rachel Carter
Researchers: Lawrence Mroz, Amber Husband
Dates: April 2016 – April 2017
Funding Agency: Canadian Frailty Network (Technology Evaluation in the Elderly Network), BCCPC



An exploration of men’s and women’s experiences of advance care planning engagement tools and surveys.

Not all advance care planning (ACP) tools meet the needs of all audiences. Several studies across Canada are aiming to find tools that are useful, promote awareness and knowledge, and assist people with the ACP conversation. An ACP engagement survey is being used to measure this.

We do not know if men and women approach and experience ACP differently. Differences have been found for health issues, such as nutrition, and these differences may also exist for ACP. If men and women interpret ACP issues differently, the tools may not be equally effective at assisting them to engage in ACP, and the survey may not be equally effective at measuring their ACP experiences.

Men diagnosed with prostate cancer and their female partners attended an ACP workshop and completed an ACP engagement survey. They were then asked about their experiences with the tool, and their interpretation of the survey questions. This allowed us to look at how men and women understand ACP and how they interpret the questions in the survey.

Using gender to look at people’s experience of ACP is a new approach. The findings will inform ACP tools and tool evaluation development, improving ACP for all.

Interdisciplinary Fellow: Lawrence Mroz
Supervisors: Richard Sawatzky, Doris Barwich
Dates: January 2016 – December 2016
Funding Agency: Canadian Frailty Network (Technology Evaluation in the Elderly Network), BCCPC


Primary Care and Advance Care Planning (i-GAP)

i-GAP is a research project that intended to increase participation by patients and families in advance care planning in primary care settings. Our goal was to improve the quantity and quality of advance care planning in primary care.

Principal Investigator: Michelle Howard, Daren Heyland
Co-Investigators: Doris Barwich, Doug Klein (co-PIs), Amy Tan, Carrie Bernard (co-investigators), Louise Hanvey, Marissa Slaven, Konrad Fassbender, Lee Green, Jessica Simon, Rebecca Sudore (collaborators)
Researchers: Larry Mroz, [Alberta RA’s (Becky Heyland, Gabriel Asselin, Shelley Wrona, and Madiha Mueen)]; [Ontario RC’s (Neha Arora, Nola Fuller, and Dawn Elston)]
Dates: April 2014 – March 2016, May 2014 – October 2016
Funding Agency: Canadian Frailty Network (formerly TVN  Core Research Grant Program)


Improving decision-making about goals of care for hospitalized, elderly patients (iDECIDE)

iDECIDE aimed to improve end-of-life communication and decision making for seriously ill, hospitalized, elderly patients. By improving communication and decision making near the end of life, we can dramatically improve patients’ and families’ experiences as they journey through the final days, improve the work experience for healthcare professionals, and avoid unwanted aggressive medical care at end of life. Expanding on previous research that identified key barriers to end-of-life communication and decision making, iDECIDE assembled a multi-faceted suite of interventions to reduce these barriers, including:

  1.  Decision support tools to help patients and families make decisions about their care
  2.  Communication skills training for clinicians to enable earlier and better discussion about goals of care with patients and families
  3.  Strategies to enhance interprofessional teamwork within systems of care

The iDECIDE study engaged three ‘incubator units’ across Canada to pilot test and refine these component interventions to prepare for wider scale evaluation and dissemination.

Principal Investigators: John You, Daren Heyland, Dev Jayaraman, Jessica Simon
Co-Investigators: Andrew Day, Peter Dodek, Robert Fowler, Andrea Frolic, Jeff Myers, Nishan Sharma, Tasnim Sinuff, Rebecca Sudore
Knowledge Users: Doris Barwich, Hamilton Health Sciences Corporation
Dates: April 2014 – March 2017
Funding Agency: Canadian Frailty Network (Technology Evaluation in the Elderly Network)


An integrated knowledge translation approach to examining a model of volunteer navigation (Nav-CARE) to support older adults living with advanced chronic illness in the home

The overall goal of the Nav-CARE program is to improve the quality of life of adults living at home with serious illness. The project builds on five years of collaborative work with knowledge partners, in which conceptual and theoretical foundations were developed, including: creating, testing, and refining a curriculum for volunteer navigators; and determining the feasibility and acceptability of the Nav-CARE model through three incremental pilots.

The impacts of the Nav-CARE model were:

  • Volunteers found the role satisfying and meaningful and would recommend it to others. They reported that continuing education and support were essential.
  • Nav-CARE clients described volunteers as good listeners, caring, personable, outgoing, friendly, patient, positive, capable, conscientious, kind, non-intrusive, and diligent in finding information. They rated the service as highly important to their care.

The program is now being adapted and tailored across diverse social and geographic contexts, with the goal of creating a sustainable program that can be implemented widely across Canada.

Principal Investigators: Barbara Pesut, Doris Barwich, Wendy Duggleby
Co-Investigators: Miranda Dalhuisen, Sunita Ghosh, Jayna Holroyd-Leduc, Grace Warner
Dates: July 2016 – June 2019
Funding Agency: CIHR

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